Thursday, August 1, 2013

Next steps, wandering minds and Acamprosate

It's August! Time to get ready to go back to school, which I simply am not ready for. Parker will start high school this year (there is no way he is old enough to be a freshman) and Allison starts middle school (again, really, no - she is not old enough for 5th grade yet!).

I am trying, really, really hard, to focus on the current day and a timeline that moves forward instead of the backwards time warp I feel as though I've been sucked into. I remember when it was simply today it Thursday! Or today is the first day of August! As opposed to it's been a month and a half since Parker had his last dose of Arbaclofen. I try not to do that because I'm sure it doesn't help. It's hard not to do that when more days than not for a few minutes here and there - I lose the son I once had a month and a half ago to painful meltdowns. When everyday I see his anxiety overtaking him. When everyday I find myself working with him to repeat things I once could understand. When I look down at the bruise on my once bruise free arm.

I try to focus on the positive. Parker still has his speech, it's a bit slurred and sometimes the words are hard for him to find - in their place I hear "I can't" or "You tell me" ... if only I knew what he was wanting me to know I would - but the speech IS still there. His humor, ever evident and up front. It is our saving grace each day. Fart jokes and calling me "Granny" light up each day. And an unexpected perk is Parker has decided, at 14, that he wants share the recliner with me, sitting on my lap while we play Minion Rush on the iPads - which I am loving every minute of. His friends, have not left his side - they are incredible and bring out the best in him.

So, there isgood. There is. I try to focus on that when people who spend time with him point out the regression or in the aftermath of a meltdown. There is good to focus on.

There is also the reality. Baclofen is not Arbaclofen. It isn't working. Well, it's not working in the way Arbaclofen did and we are warping back in time to a place I don't want to go back to. We've been there, we've survived it, we made it out. We made it out to go forward, not return.

Allison's regression was fast and obvious. Thankfully, we were able to start her on Lexapro and that has been very helpful with her anxiety. It helps to know she is going to keep moving forward.

With Parker, it is harder. It's hard not to know exactly what to do next. It's hard to have so few and limited choices. It's hard decisions to make, research to do, steps to take. There's no book. When you have a baby you get books on how to raise your child. There are hundreds. No where is there a book that says "Here is how to raise your special needs child" And one book wouldn't cover it as each disability is so individual. Even Fragile X, it is such a spectrum a single book could never cover what is needed, plus the answers, therapy, treatments... it all changes so fast we would be on the 10th edition before the first went to print. While, yes, I am writing a book - no it is not on "how to". This is not where I was intending for this blog to go (welcome to my mind!) but seriously if ANYONE needs a "how to" book - it's special needs parents.

How to by the chapters:
1. Be an advocate
2. Find a doctor
3. Not kill people who make horrible/uneducated comments
4. Learn about medications, research and trials
5. Spread awareness
6. Not kill people who mean well by saying they understand and making comparisons that are completely insane and irrelevant.
7. Not live in isolation
8. Grieve/mourn
9. Move forward
10. Not kill people who tell you how to raise your children when they 1. Don't have any or 2. Have never raised a child with a disability
11. Work with the school
12. Understand acronyms
13. Create effective IEP's
14. Shoot laser beams from your eyes
15. Learn when not to shoot laser beams even though you really want to.
16. The most important questions to ask 1. At the doctor 2. of the school 3. about medication 4. involving research
17. How to get involved - life is always easier when you are not alone
18. Grief again, in sneaky stealth mode - because that's always a kicker
19. Combine the special needs world and typical world
20. Live. Breathe. Laugh. Love.

Notice I didn't include a chapter on sleep? That's because I don't sleep or even know how to tell someone to - maybe that can be part 2 ;-) Huh, maybe I should be writing a "how to" book! Kidding.

Backing up to the real purpose of this blog... not knowing what to do. This time warp that has pulled us back. A choice needed to be made. The baclofen wasn't helping the way we needed it too. I wanted it to. It was the "easy" answer. But, like with many others - it wasn't the right answer.

I can't even begin to describe how hard and gut wrenching it is to watch your child go through what many of us who weaned off the Arbaclofen have seen over the past couple of months. I want to cry and scream and pout that it's not fair or right but that won't fix anything. It won't help the reality we face.

I would love for someone to say "Here is the answer. This is the path, the next step to take. Don't be scared. Don't worry. This is right. Good things will come from it. Everything will be ok. Parker will be better, his future will be better, everything will be better." I want to hear those words and know they are true.

No one tells you those words. Yes, I know, parents of typical children have major decisions to make too. Mine, today, involves finding the right medication so my son can enjoy life and be part of society again without aggression, without anxiety, without horrible, scary side effects. Yes, there are parents who have children who are dying and their decisions are even harder than mine. There is no comparison, someone is making significantly harder decisions, my heart hurts for them and they are in my prayers. I try not to lose that perspective.

Today, we start weaning Parker off of the baclofen and slowly introducing Acamprosate. It is a 30 day weaning process off of one drug and onto the other. Dr. Craig Erickson has been using it in Fragile X patients will really good success, two clinical studies are about to begin to prove the effectiveness of this drug for treatment of Fragile X. It's already available by prescription, so we will not be participating in the trials as we need something now (and the clinic is 4 hours away and he starts high school in 18 days).

I don't know if this is right, but honestly, I am out of options. I need for this to be right. I need this to be the miracle drug for Parker that is has been for a few of my friends.

Much, much more importantly than me needing this, is Parker. Parker needs this. He deserves a miracle - I pray this is it.

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About Me

***Since Fragile X became a part of my world in 2003, I have been very public in sharing the journey of my family. You all know, I am not shy about sharing my feelings! In 2010, I became an employee of the National Fragile X Foundation (NFXF) as the Community Support Network (CSN) Program Coordinator. I understand this could lead to some confusion about whether I am speaking for myself or the NFXF. I would like to be clear, whether it is here on my blog, on Facebook, Twitter or any other social media outlet, I speak only for me, Holly Usrey-Roos, mother of Parker and Allison. What you are reading are my personal thoughts and feelings only.***